How One Mother Gave Her Son With Autism Financial Independence

There always seems to be a story on television or in a magazine about single parents of autistic children who are on the brink. Most of their stories are similar; the parent could not work, could not afford to stay home, could not afford a full-time carer, could not afford a decent group home.

One of the most important things for the mental health of parents of disabled children is knowing that their children will be cared for financially after they are gone. Financial planning isn’t glamorous, but it is necessary.

Betty Lehman created a blueprint for financial planning for the disabled many years ago, when there was still very little understanding of autism and its impact not only on parents' mental health but also on society as a whole. At the same time, Betty Lehman also fought to change disability legislation and later started a company that helped parents plan for a financially independent future for their children.

What I found so inspiring about Betty Lehman was her grit and insistent vision of creating a financially independent life for her son with autism. What follows is her story in her words. This is part one of a two-part series.

What Will You Do When I’m Gone?

The life of a parent of a disabled child is so busy that they never have a minute to ask, “What’s going to happen if I can't take care of my child?”

When mothers or fathers think about dying, what stabs them in the heart is leaving their child behind. The best thing a parent can do is start planning for an independent life for their child as soon as they possibly can so that when they die, their child will of course miss them and love them and always remember them, but they won’t be dependent on them.

A No-Whining Policy

I feel very blessed that my parents basically had a “no whining policy.” They said “fix it,” and now I say, “OK, what do I need to do to fix it?” I was an older mom, and I was a single mom. I had to earn enough money for retirement, and my son had to have enough money to live independently.

I told myself, “I’m not going to be the sole caretaker of my son forever.”

Separation Anxiety

We have codependent relationships with our children when they're little by necessity. However, it’s not healthy to continue to be dependent upon parents later on, especially when they are going to pre-decease you.

My work is to start that separation earlier in life so a disabled child has other people that they can depend on and, as a consequence, other relationships. It’s important to learn how to slowly transfer control to other people over time. If you have a financial plan when your child is 11 years old, by the time they're 22 or 24, you’re able to have a more normalized relationship (instead of being a permanent caretaker, therapist, chauffeur, etc.).

Ferrari

People on the spectrum or with mental disabilities are not very materialistic. They might have fantastical thinking like they want to drive a Ferrari when they can't even get a driver's license. But what they really need is enough food to eat, proper medical care, and people who are checking in with them to make sure that they are happy and satisfied.

Disabled adults can get Section 8 housing, but the government takes their entire disability check for the rent. There’s nothing left to go to the baseball game unless the home where they are living or a charity takes them. Their self-determination is taken away.

I don’t make a lot of money. I have life insurance to fund my son’s needs when I die. We created a Supplemental Needs Trust to cover costs that the government can’t or won’t pay for. The named beneficiary for my life insurance is a trust for the benefit of my son, not my son.

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Community

My son is nonverbal, but he's out in the community, and he's recognized all over Denver. Oftentimes, when I’m out with him, people ask me who I am. If a stranger grabbed my kid and he's in the grocery store, the pharmacy, the library, or the museum, someone will let me know.

My son lives independently. He has his own place to live because I bought him a townhome. He requires 24/7 care. He’s getting a Medicaid waiver in the state, so they pay for a supervisor to live with him. He has two volunteer jobs. For somebody who was considered the highest level of need and one of the most disabled, he's having a pretty good life.

Source: Courtesy of Betty Lehman

When I’m Gone

Here's how the trust works:

1. I have a family trust with a supplemental needs clause. Until I die, I am the trustee and I can change the trust.
2. When I die, the trust cannot be changed. A new trustee will be responsible for the distribution of funds for my son’s quality-of-life needs.
3. I already have titled my bank accounts in the name of the trust.
4. Any asset with a beneficiary designation, like life insurance and retirement accounts, is already in the name of the trust.

I don’t live in fear about what will happen to him when or if something happens to me. I know exactly what will happen because of the legal, financial, and disability planning in place. And he will miss me—we have big love. But he will live a dignified and quality existence—to the end of his life—and it's all because of planning.